Child of a parent caregiver.

I am not the caregiver but my mom is. My almost 90 year old grandma lives with my mom and dad. She has had Parkinson's for years now. I am married and have my own life but have become very ashamed of my mom's behavior towards my grandma. My mom shows all the signs of caregiver burnout. She refuses help, believing that she can take better care of grandma then others. I have told her that she needs to also take care of herself. I am ashamed that my mom has taken to verbally abusing my grandma out of frustration and lack of patience. My dad sides with my mom on this, stating that there is nothing wrong and that I don't understand and don't live at home. I have tried to distance myself from my parents because I do not agree with what is going on. My mom's siblings have been no real help. While I know my mom is very stressed out and she feels like she had made a promise to my grandma, relationships are starting to become strained. I have mentioned online support groups, therapy and having a nurse come to their house more frequently. She has had a nurse come in but still shows burnout. I don't know what to do as her eldest daughter and how to support my parents when I do not agree with what they are doing. I am wondering what other peoples experiences have been in my position. Any advice would be great. Thank you!

18 Comments

Sweets50, caregiver burn out is pretty much the norm and it is hard to break free from it. There is a lot of frustration and lack of patience. Not everyone is cut out to be a caregiver, I knew that about myself from the get go.

I bet your Mom probably promised her Mother that when she got older that they would never place her in a nursing home. Of course, when one promises that to a parent, the parent [such as your grandmother] is much younger, very independent, still living on their own, etc. We never vision our parents or grandparents aging. And we never expect hands-on caregiving to be so very difficult.

Hiring caregivers is a must if one can afford the hourly rates. Maybe it is an issue that Grandmother never saved for a rainy day or the opposite where Grandmother had saved but refuses to use the money. My parents [who were in their 90's] refused to let loose one dime.

Or if hiring caregivers is not an option, than maybe an Assisted Living facility. There are a lot of very nice ones, then Grandmother could be with people of her own generation, and maybe enjoy the entertainment, etc that is offered. But Grandmother is from the era where "nursing homes" were asylums, so she would never want to step foot into one. Some are set up like 4-star hotels with daily linen/towel service, 3 meals a day, a personal Aide to help her get ready in the morning and to check in on her during the day, then help her get ready for bed. Of course, these places are not cheap. So that idea might be not feasible.

Thus, there are options. Why not set up a family meeting to learn about everything that is going on [don't include Grandmother]. Or offer to give up a weekend to help your Mom. That would give you part of a perspective of what is involved.

Comment Reported

I too was upset with the way my Mom treated my grandmother. But now that I'm the primary caregiver I understand. Help when you can and don't judge. The last thing your burnt out Mom needs is you to distance yourself because you disagree with her. Instead take over caregiving occasionally, maybe allowing your parents a date night or a mini break.

Comment Reported

Sit down and have a discussion about your concerns and how you could help. You coming in and telling a parent what they "should" do and how to do it, is always going to be met with resistance. Parkinson's disease is very difficult to handle since it involves the muscles not working and someone needs help with most movement in later stages. Their mind might be sharp, but movement is faulty. Your mother is used to having your grandmother as a whole person without these challenges, and I suspect each day is heartbreaking to see your grandmother decline. So lighten up, take care of your own family, and step back from the situation until asked to help.

Comment Reported

I can offer you some perspective as a caregiver for my disabled wife. While I appreciate and respect your desire to understand, you are not in a position to make assumptions or judge what is going on within a house you don't reside. Perhaps your perspective is coming from discussions with your mother where she uses that as opportunity to vent and has nothing to do with her actions. I sincerely hope you do not take the advice of calling some outside protection agency and create even more stress to your mothers situation. You either believe your mother is a good loving person and tries her best to care for those in her life or you don't. Your options are to help her down that road by either taking the steering wheel sometimes, helping to remove obstacles in her way or simply wipe the rain from the windshield. The task she has is something nobody understands unless they live it. Be a supportive, loving and helpful passenger in this journey or get out of the car.

Comment Reported

I understand your position, and that your mothers behavior toward your grandmother (who I am sure you love) is upsetting you. If at all possible, maybe you could talk to your mother about putting her in assisted living. Are there funds to be able to to this? I'm sorry you have to go through this.Good luck.

Comment Reported

Your mom needs a break. If grandma lives with your parents and has no assets, the smartest thing your family could do is get her on Medicaid. That will open up more options to your family, such as the one I'm about to suggest: RESPITE CARE.

Respite care, in a nursing home, is when you enroll your loved one in a nursing home for anywhere from 3 to 30 days for them to be taken care of professionally while the regular caregiver gets a break. It is all inclusive, room, board, help with activities of daily living. There is a nurse present at all times and her meds and any needed medical care will be covered by her insurance.

Medicaid covers respite care. All you guys need to do is find a GOOD nursing home that offers respite (most do). This means visiting homes in your area and asking questions. When you tour the facility you will be able to tell if it's a good one. Pay attention to the behavior of the staff and how the residents are being treated and ask yourself, "if I needed care, would I want to live here for a month?" When the answer is yes, get the paperwork started.

It sounds like it's bad and your parents can't see the forest for the trees. You have no idea how consuming caregiving can get, how it wholly sucks you into its world. Your parents need to enroll your grandma for the full 30 days and spend the first week sleeping through the night and becoming normal again. They need to go to a movie, or out to dinner. The need to take a very long walk without worrying that there's no one at home with your grandma. They need to reconnect with their friends, their church or hobbies, and their own lives. They need peace and quiet.

After that 1-week point, have a family meeting and decide how you'll proceed from there. Your parents may realize how much they were damaging themselves by taking on a responsibility too great for them. At the same time, your grandma might be realizing that she likes having her meals prepared by a culinary institute graduate and delivered to her at the same time every day. She may enjoy the social aspect of being with people her own age.

It's definitely worth a try. Worst case scenario is that your parents get a short break, then it's back to business as usual, but isn't that worth it?

Comment Reported

I too have struggled with burn out and it does make you exhausted, frustrated, angry, sad, feeling hopeless and even scared and alone. Please try not to judge your mom too harshly. It is SOOOO HARD!. I caught myself yelling occasionally and saying something mean. I had several nervous breakdowns where my main symptoms were exhaustion and uncontrollable crying but Thank GOD things changed. I got HELP from Aging Waiver which provides caregivers; also I turned to God for strength and comfort which has added a beautiful demension of true constant powerful LOVE that I'm not capable of giving on my own. Caregiving an aging sick person parent is truly one of the hardest jobs to do WELL on the planet, I believe. I took care of a sick son & and then a sick dad and mom so I do know the pitfalls and joys. CONSISTENT ABUSE IS NEVER TO BE IGNORED. I disagree with the one comment that if you can't help basically butt out. If you can't help your parents and they refuse to get help I think you should call someone to try and get them help.

Comment Reported

Is your dad supportive or does he expect all he is used to from his wife while she is totally consumed wit grandma. You may be the eldest but this is not your sole responsibility. A family meeting is due now to sort out how the other siblings can help. Do not take grandma to your home for respite that will set a very bad president. By all means offer to stay in Mom's house so they can have a few days freedom even if they only go to your house for the break. I am sure you think your mother would feel she was failing grandma if she went to assisted living but in truth she would be failing herself if she does not obtain the best care for grandma. Recognize that grandma is and will continue to get worse leading to more frustration for Mom.

Comment Reported

The above comments are, for the most part, very good observations and suggestions. I would just add that in my case, as in many others, the burnout issue is almost always due to limited funds. We have a few helpers who are outstanding and Mom loves them. But at anywhere from $25-$50 an hour, we can only use them VERY occasionally, when I have a well-paid project underway. That is rare now that I'm semi-retired and an almost-full-time caregiver for Mom. She sleeps so much that I sometimes think she might as well be sleeping in an assisted living facility. On the other hand, maybe she sleeps because she feels safe and protected, since she has always had trouble sleeping through the night before coming to us. She seems happy enough, even though I'm constantly aware of my shortcomings as a caregiver. The easy answer is "hire respite care", and it's a great answer -- if one can afford it! Most of us (or many of us) can't. But one thing it has done for me -- I have forbidden my son to take me into his home should I develop dementia. While I am basically glad I can take care of Mom, I do NOT want my son's wife and daughter's lives to be limited by me in the way Mom's disease is limiting my husband and me. When it's time, I will live with a cheap but clean and friendly assisted living or nursing home and hopefully still have enough sense to be grateful for it. But then, my son and I have talked this through so it will be clear that he is NOT expected to baby me and meet my every need, as was my mother's dream for her final years (after years of doing that for other people). Each situation is unique, but what I agree with from above is (1) no caregiver needs someone else second-guessing and judging how they're coping; (2) every caregiver will be grateful for occasional respite care from a family member; (3) it doesn't get any easier, so don't make commitments that will imprison you later in your own life; and (4) when you find yourself in a situation that is bringing out your "evil twin" and putting her in charge, the only solution I know is to back off, spend some time in the presence of your loving heavenly Father, and accept that what you cannot do for yourself, He can and will do for and through you. It does work!

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